I had CF clinic today to follow up from when I was on IVs.  My lung functions were up a little to 30% / .87L FEV1.  We talked about this range being my new normal (baseline) for lung functions.  Thanks virus, thanks a lot.  I shared with him what was done at Barnes for my transplant appointment, some of which he already knew.  I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri.  They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups.

I have been doing my research on some things that will be needed pre and post transplant.  I have gone through the handbook Barnes gives all of its lung transplant patients, highlighted and made notes of things I need to know.  I have a list of things I need to find out still, phone calls I need to make, etc.  It is still overwhelming but I have some friends and family that are helping to make it a little easier to digest.  Things are being figured out along the way which is hard for the very type A/OCD person that I am.  I’m trying to just let it happen. hahaha

Until next time…